Families pray for a Christmas miracle: Help save three boys battling rare disorders, cancer
Cape Town - With only Christmas only days away, three families are praying for a miracle for their three boys, who suffer from illnesses that could take their lives at any time.
The three little boys from Cape Town were diagnosed with rare and life-threatening disorders and cancers.
One of the boys eight-year-old Elam, whose hope of finding a matching donor this week, just days before Christmas, was shattered when the person was no longer available and lived abroad. Little Elam’s surname has been left out in order to protect his identity.
A year ago, Elam from George was diagnosed with Severe Aplastic Anaemia, a rare and life-threatening blood disorder.
Like any little boy, keen to run and play, he is unable to enjoy his favourite hobbies such as playing video games or drawing until he receives the life saving stem cell transplant from a matching donor.
Sadly, for the past months, Elam has not found a match out of the 100 000 South Africans who have registered as potential donors.
This week, Elam’s mother, Khanya, said there was a glimmer of hope.
“The doctors found a lead for a donor, but we were now told the person was no longer available and lived abroad,” Khanya told Weekend Argus.
“The doctors have him on alternative medication right now, hoping his situation will show some improvement while still in search of a donor.”
Khanya said the journey has been overwhelming and devastating as she continues to pray for a miracle.
“We waited about 3 months then we heard there was a match, but out of the country and the hospital had planned on raising funds to get the person to South Africa but we were just told the person became unavailable, so the transplant was no longer available.”
Khanya first noticed something was wrong a year ago when he was accidentally hit by a stone while playing with friends.
His eye quickly swelled shut, and concerned about possible eye damage, she rushed him to George Hospital where he received treatment.
Tests were conducted and Elam was transferred to the Red Cross War Memorial Children’s Hospital where doctors diagnosed him with Severe Aplastic Anaemia.
He has been unable to attend school since then.
The greatest wish Khanya has this Christmas is a lifeline for his life.
“Giving someone a chance at life is fulfilling a purpose, and it will always be appreciated.”
Deutsche Knochenmarkspenderdatei, known as DKMS, which translates from German as Bone Marrow Donor File, is an international non-profit bone marrow donor centre which is carrying out a virtual appeal for people living with rare and life-threatening blood disorders.
Palesa Mokomele, Head of Community Engagement and Communications at DKMS Africa said in order for Elam’s and Khanya’s wishes to be granted, they were appealing for a donor.
“While over 100 000 South Africans have registered as potential donors over the past three years, there currently isn’t anyone who shares enough human leukocyte antigens (HLA) characteristics with Elam,” she explained.
“While over 100,000 South Africans have registered as potential donors over the past three years, there currently isn’t anyone who shares enough human leukocyte antigens (HLA) characteristics with Elam,” she explained.
“For a donor to be considered a match, they and the patient must have at least eight out of 10 tissue characteristics in common, but ideally, they should share 10.
“Without this, the patient’s body would reject the stem cells provided by the donor, so Elam desperately needs more people to register to help him regain his childhood.”
Another family that is praying for a miracle is that of Cody-Lee Africa, 3, and his mother, Leticia Peters from Kraaifontein.
In October, the family’s lives were changed forever when their active little boy who loves fire trucks, was diagnosed with a rare and aggressive form of cancer known as Burkitt lymphoma cancer.
Dr Anel van Zyl, Head: Paediatric Oncology unit at Tygerberg Hospital, said patients had to undergo six months of aggressive treatment.
“Burkitt lymphoma is a cancer that develops in lymph nodes (glands) or lymphoid tissue and may be strongly associated with certain viral infections, immunodeficiency, or syndromes. It is the third most common cancer of the glands in children but may also occur in adults,” Dr van Zyl explained.
“This tumour is highly aggressive, meaning that it grows very fast. The tumour may double in size in 18-24 hours.
“Special scans are performed to evaluate whether the cancer has spread (metastasised). Burkitt lymphoma is treated with intensive chemotherapy for about six months and usually responds very well.”
As any little boy, Cody-Lee is waiting for Father Christmas is to place a red and big fire truck under his Christmas tree while his family wishes for a full survival following his treatment.
In September, Peters noticed a lump on Cody-Lee’s stomach and took him to their local clinic where he was referred to Karl Bremer hospital and later to Tygerberg Hospital where he received his diagnosis.
“The news was overwhelming, leaving us in shock and disbelief. How can my lively and happy baby boy have cancer and as parents were plunged into medical jargon, treatment plans and endless questions.
“From the moment of his diagnosis he has shown an incredible spirit and continues to inspire us all.
“I cried along with him and felt helpless and not and not being able to stop the torture he had to go through wit his eyes crying for mommy to make it stop. We will continue to fight one day at a time for Cody-Lee.”
For the family of seven-year-old, Leo Phillips of Somerset West, they continue to praise God and medical staff for his miraculous recovery after he was diagnosed with Acute lymphoblastic leukaemia (blood cancer) in April.
Like Cody-Lee, Leo’s mother, Anna-Marie Phillips noticed a lump on his neck.
“Afterwards, the paediatrician there took a video of Leo's breathing and sent it to the Dr at Tygerberg Children's Oncology,” explained Phillips.
“She said he had to come in immediately as they had to do x-rays.
“You know, I just knew it was cancer. It’s as if the Lord always made me aware that Leo was going to have cancer and I always thought it was anxiety that made me so nervous about it but I now realize it was God’s hand that made me aware and so we picked it up quickly. All glory to Him! If we had waited any longer it would have spread.”
Phillips said the medical team at Tygerberg Hospital were amazing.
Following treatment, doctors confirmed the mass was gone in his neck and he has since been in remission.
“He had started treatment immediately and a month later the mass in his neck was gone,” she said.
“The x-ray of his chest was completely clean! Praise the Lord.
“I prayed all the time thank you Lord that you destroyed every cancer cell. Prayer warriors prayed together! Thank you all!
“The other day the Dr told me he has been in remission since that first chemo session! Doctors are amazed.”
Leo continues to do testing to check on his progress and is able to return to school in 2025.
“We are going to walk the road for another two and a half years to prevent it from relapsing but in Jesus’ name he will not relapse! Because he is high risk we have to treat him for so long,” she added.
According to Dr van Zyl, T-cell acute lymphoblastic leukaemia (T-ALL) or blood cancer, is the most common type of cancer in children: “The treatment also includes intensive chemotherapy for about 6-8 months, followed by lower-dose maintenance chemotherapy for another 2-3 years.
“Some children may require a stem cell transplant.”
genevieve.serra@inl.co.za